U01MH127704

Research for Ethical Data Science in Southern Africa (REDSSA) - Project Summary

The Research for Ethical Data Science in Southern Africa (REDSSA) project has the overall aims of producing new knowledge in regard to the ethical, legal and social implications (ELSI) of conducting data science research, to develop evidence-based, context specific guidance for the conduct and governance of data science initiatives such as DS-I Africa, and to strengthen the culture of responsible data science in Southern Africa.

The project will be conducted in three phases. Phase 1 is research intensive and will obtain empirical data on key stakeholder views regarding the development of data science guidance to inform governance of DSI-Africa research hubs in Southern Africa. This phase will start with conceptual research and normative analysis of the ELSI issues related to data science.

Important concepts to explore will include data sovereignty where data protection is balanced with responsible data sharing. Given that digital data is often experienced as intangible and abstract by the lay public, the project will employ crowdsourcing as a form of citizen science to inform the development of innovative educational tools that could be adapted for stakeholder engagement in data science in the DS-I Africa network.

Using these tools, we will conduct in-depth interviews with key stakeholders to ascertain their experiences with ELSI-data science related challenges, gaps in current guidance, and their views on procedural and substantive aspects of guidance development in data science governance. Key themes that emerge from the empirical research will underpin our approach to co-creation of guidelines, procedures, and policies required in the DS-I Africa consortium.

During Phase 1, ethics consultants embedded in the research hubs will address emerging ELSI concerns. In Phase 2 of this project, we will develop guidance documents informed by Phase 1 research and by best practices in international data science research guidance, the limited experience and existing literature to date concerning data science research and governance of data management in Southern Africa.

Importantly, such guidance will be informed by the values of solidarity, sharing, and mutual benefit - important concepts in Southern African moral frameworks based on communal good. This approach is congruent with health data ecosystems that require different stakeholders to work collaboratively for health innovation.

The results of these policy-related activities will be tempered with key concerns and principles identified in our conceptual and empirical work and will provide locally grounded, practical guidance on the ELSI of data science research conducted in the hubs.

In Phase 3 of the project, we aim to amplify the impact and enhance the sustainability of our research and governance activities by creating ELSI networks and communication channels focusing on data science in Southern Africa. This will involve establishing an ELSI Data Science Southern African Network (EDSSAN) to respond to evolving ELSI concerns in DS-I Africa research hubs beyond the funding period, hosting annual conferences, and leveraging existing local networks.

Stellenbosch University

NOT APPLICABLE

93.310 - Trans-NIH Research Support

National Institute of Mental Health (NIMH) [HHS - NIH]

National Institute of Allergy and Infectious Diseases (NIAID) [HHS - NIH]

South Africa

Foreign

Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa): Ethical, Legal, and Social Implications Research (U01 Clinical Trial Not Allowed) (RFA-RM-20-017)

Amendment Since initial award the End Date has been shortened from 07/31/26 to 01/31/25 and the total obligations have increased 124% from $400,000 to $896,204.